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Legislation on Enteral Formula

As a 501(c)(3) non-profit organization, the Oley Foundation is strictly limited in the amount of resources we can devote to lobbying. We have not had the opportunity to review the legislation discussed in the article below, and cannot comment on it specifically, but we support the efforts of consumers and families like the Fazzaro’s struggling to get fair coverage for homePEN therapy. If you are involved in any similar types of advocacy, or lobbying issues, please keep Oley informed. We will do our best to support your efforts. Readers may also be interested to know that a new bill that aims to ensure insurance coverage of EN formula was introduced in Ohio as well. To read the actual bill, click here, type in Bill #318, and click on "House.” You can also email Sandy Bulcher at Dbulcher@aol.com for more information.

Our son Jon who was diagnosed with Crohn’s disease at age 13 has been on Vivonex enteral feedings via a PEG since 1992. This has been a crucial element of his treatment which enabled him to achieve normal growth and development, and which still helps him maintain his active and productive life. Maintaining insurance coverage for this part of his therapy has been problematic for us, and we are concerned about his continued access to this aspect of his care as he transitions into independence.

When he was first started on NG feedings his primary insurance coverage was an HMO through his father’s employment. According to every document we had ever received from this HMO, any and all care that any of us might require would be provided as long as we had complied with their rules for arranging care through the primary care physician, obtaining appropriate referrals, etc. So we were shocked when the HMO adamantly denied coverage for either the Vivonex formula or any of the supplies associated with its infusion, stating flatly that this was "not a covered service”. Nowhere in their plan description had they hinted that anynecessary services were simply "not covered”. Fortunately, I was also employed and Jon had secondary coverage through my employment at a hospital. One provision of this hospital’s benefit contract was 80% reimbursement for employee purchases from the hospital’s own pharmacy. So for a number of years I continued to order the Vivonex where I worked. However, the fact that our HMO could get away with flatly refusing to cover something so obviously medically necessary as Jon’s enteral feedings continued to rankle. And, as it became increasingly obvious that Jon would continue to require these feedings indefinitely, we had to worry about what would happen when he was no longer eligible as my dependent for my employer’s insurance with its own peculiar loophole.

I didn’t know anyone else on home enteral nutrition. I put out a feeler through the Mutual Help Network column of the Crohn’s & Colitis Foundation magazine. I received only a few scattered responses from other patients, but their insurance experiences, like ours had been pretty negative. I felt more and more strongly that if insurance companies were not willing to voluntarily cover enteral feedings, there must be regulation or legislation from the appropriate government entity to protect these patients from what amounted to blatantly discriminatory treatment of their particular medical need. But where to begin such a process seemed a very daunting task without more patients or families to join in the petition.

The process received a shove at the end of 2000 when my employer announced a new benefits program which would eliminate the provision under which Jon’s Vivonex had been covered. This was a particularly inconvenient time for such an announcement as it coincided with Jon’s reaching the age where he would have to transition into COBRA, adding the cost of his own insurance premiums to the usual expenses for a college student. With or without more support, it was apparently time to do something. One of the parents who had answered my initial inquiry was able to connect me with one additional family in New Jersey. Together we wrote to our representatives in the New Jersey state assembly and senate, and to all of the members of the insurance and commerce committees. Though much of the response from these legislators was discouraging in tone, we have succeeded in having a bill (A-3317) introduced in the New Jersey State Assembly which would mandate insurance coverage for non-prescription enteral formula. This bill has now gone to the Assembly Health Committee for consideration. How it fares in this committee, and whether it is ever enacted is likely to depend on whether or not we are now able to rally additional supporters to make it a visible issue. I am so happy that I stumbled onto Oley Foundation on the internet. I hope that this is finally a place where I can connect with others who have similar issues. I would be very happy to hear from HEN consumers anywhere, but especially anybody in New Jersey who can help us support A-3317 and see that this bill is enacted into law.

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

Updated in 2015 with a generous grant from Shire, Inc.

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.